Pediatric Multiple Sclerosis; Can Children Get MS?

It is well known among the MS community that Multiple Sclerosis affects woman in their 30’s about three times more than it affects men. But if you have spent time mingling with other’s in the MS community you will know that it obviously affects more than just woman in their 30’s. I mean, I am a guy and I was diagnosed at the age of 20, which is somewhat out of the “norm”. Or is it? Well statistically speaking yes, but people diagnosed at earlier ages than 30 are actually not as uncommon as people may think. However, what is uncommon is children being diagnosed with MS under the age of 18. It’s uncommon but not unheard of; according to the National MS Society children as young as 2 years old have developed MS! This is what is known as Pediatric Multiple Sclerosis, which by definition is MS that affects children 18 years of age and younger.

Around 3-5% of adults with MS experience their first attack prior to the age of 18 but it is very difficult to diagnose MS in children because the disease mimics so many other diseases such as Acute Disseminated Encephalomyelitis (ADEM) or Transverse Myelitis (TM), which cause symptoms very similar to MS such as loss of vision, numbness and loss of balance. Since most pediatricians are not expecting or looking for MS in patients so young it is often not even considered to be a possibility in the diagnostic process. When MS is considered in these patients, it is more common to actually find clinically definite MS in children older than 11 years of age but just as most patients are diagnosed between the age of 20 and 40 there are always people outside the average so sometimes MS is diagnosed in children younger than 11.

When a child is diagnosed with MS their disease typically presents just the same as it would in adults with Relapsing Remitting Multiple Sclerosis (RRMS). The most common symptom a child may experience in their first MS attack is bilateral optic neuritis; bilateral meaning in both eyes as opposed to a single eye (unilateral). Not only are children more likely to present with bilateral optic neuritis than adults but children under the age of 10 are especially more likely to present with bilateral optic neuritis. Not only do children tend to experience the same symptoms as adults with MS but they also are more likely to experience seizures and personality changes (National Multiple Sclerosis Society).

An interesting characteristic of Pediatric MS is that children tend to experience a higher frequency of relapses than adults but overall the disease seems to progress at a slower rate (meaning it takes children about 10 years longer than an adult to develop permanent disability after their first onset of symptoms). So let’s introduce two theoretical patients to help you understand what this means. The first patient noticed their first symptoms when they were 10 years old and the second noticed their first symptoms when they were 25 years old. Now let’s say the second, older patient started developing irreversible disability at the age of 30. That is 5 years after their onset of their first symptoms. The first and younger patient would statistically take 10 years longer than the second patient to develop permanent disability, which means they would start to develop irreversible symptoms by the age of 25. That is 15 years (10 years longer than 5) longer than it took the older patient to develop permanent disability after the first onset of symptoms meaning the child’s disease progressed much slower but the child still wound up with permanent disability at a much younger age (25) than the adult (30).

So how is Pediatric MS treated? Pediatric MS is often treated the same as MS in adults however, many Disease Modifying Therapies (DMTs) are not actually approved by the Food and Drug Administration (FDA) for use in children under the age of 18. However, there have been studies conducted by the FDA that suggest that injectable MS therapies (even Tysabri) are safe for use in treating children with MS and many first line therapies (such as Copaxone) have proven to be well tolerated in children. Just like with adults, when a first line treatment does not seem to be helping, Tysabri (which has been safely used in children just as studies have suggested) is typically the next choice of treatment. Treatments such as corticosteroids, Intravenous Immunoglobulin (IVIG) and Plasmapheresis have also been used on top of a DMT in Pediatric MS. Just like in adults, the therapies a physician chooses to implement are typically used at the physician’s discretion based on each individual’s disease characteristics, especially since there are currently no criteria for the dosing of these medications in children. Unfortunately there is currently no data regarding the use of oral DMTs in Pediatric MS and I say unfortunately because we all know how much children just love needles…

Multiple Sclerosis tends to be a devastating diagnosis for most adults so I can only imagine how scary MS would be to a child. I definitely feel that it is just so unfair that a child would have to deal with a disease like MS but after talking to others about this I have had to wonder… Would it be easier growing up with a disease or being diagnosed in the middle of life? On one hand if you are diagnosed that young you could say you have nowhere to go but up where someone diagnosed at an older age may never be able to do as well as they were doing before their MS. On the other hand as an adult with MS I am very happy to have experienced the things that I have in life before my diagnosis and I personally do not think I would have the same strength to fight this disease had I not experienced all those things. So personally I would say I am glad that I had a “normal” childhood but of coarse everyone’s opinion will differ. What do you think?

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Comments

I had my first relapse when I was 14 but didn’t tell anyone that my feet were numb. When the numbness returned when I was 15, I finally told my parents and they brought me to the doctor who referred me to a neurologist. After my first visit and spinal tap, I was diagnosed with ADEM. However, later that year I experienced more numbness from my feet to my legs and stomach. After that relapse and MRI’s I was diagnosed with MS at 16 years old.

I didn’t experience many MS-related problems through high school and college other than the typical fatigue and balance issues. But now that I have graduated with a bachelor’s and master’s degree, I am having a hard time finding work.

Maybe it’s because my fatigue kicks in while sitting at a computer all day since I can’t stand or walk longer than 5 minutes.

At this point, I’m very frustrated with my employment outlook.

I’m curious now about what other patients are currently doing for work. Can you please post a comment about your current work situation?

Wow, so sorry for the late reply! I have not been getting comment alerts so I just thought no one was interested in what I have had to say lately but looks like that is not the case!

I am currently unemployed and the SSA kicked me off SSI because “I am not disabled” which even my neurologist says “is ridiculous” in a much more colorful language haha… Honestly I myself wonder how people live with MS (financially) but everyone I ask is on SSDI… I am still supposed to pay back every penny I got from SSI (over $25,000) so… I am not in the “advice giving boat” haha…

My son had his first relapse at 7, also initially diagnosed as ADEM, several relapses and years later he was diagnosed with paediatric MS in 2010, age 9. He was treated with interferons, for 2 years and is now 12, with no relapses since the end of 2012 and his past 3 MRIs have been clear.

Wow, so sorry for the late reply! I have not been getting comment alerts so I just thought no one was interested in what I have had to say lately but looks like that is not the case!

But wow, see, it’s obviously “a thing”. Glad he has not relapsed! That is impressive! I have heard the younger you are the more aggressive MS is but I am not sure if that is based on anything but professional experiance and opinion…

My son had his first relapse at 3, originally diagnosed with ADEM. 4 more hospitalizations by 7 and diagnosis changed to MS. He started taking Rebif but went into liver failure. Now he is on Tecfidera and doing wonderful. as far as I know one of the yongest to start an oral at 7. MRI on Friday, fingers crossed.

Thanks for sharing your son’s story! So sorry to hear everything he experienced with Rebif, but glad to hear Tecfidera is working well. Wishing your son and family all the best! Keep us updated with on how the MRI goes. – Kelly, Community Manager